Thank's guys…I've heard the second sct is easier but also that it can take longer to recover from so I'll take it as it comes and hope for the best.
Least I have experience this being my 2nd so I more or less know what to expect.
Bridget,Debs you are both absolute rocks,a great inspiration to us all.
Ian,what you say seems in agreement with…[Read more]

Hi Bridget,had a letter from The Freeman Hospital and an appointment has been made for 19th May with regard to a second transplant procedure.
By this time I will have completed 6,cycles of Velcade so they may be looking at going for the SCT in June.
Thank's for been the only one to reply and give support to my previous post.
I know I can always…[Read more]

Hi Anne,I was given a high dose of Melphalan prior to having my first SCT and it wiped me out completely.
I could'nt keep anything down for the first 10 days and was on a drip for a week while in hospital.
I lost a stone in weight due to the fact that the drug vertually destroys the digestive system and it took a further 3,months before I…[Read more]

Had my 2nd injection of the 4th cycle of Velcade yesturday and the dose has now been reduced from 2.6 to 2.0 Mil.
I asked about the Dex and was told that will also be scaled down from 10 to 8 and then to 6 and so on as it's thought it could be the reason for the extreme fatigue,and should also minimalise the side effects when entering the rest…[Read more]

Hi Tilak,is this your second relapse as Revlimid if I'm not mistaken is not usually given at the first relapse stage?
In any case I don't think it makes too much of a difference what you decide to have as all treatments come with some kind of side effects.
With Velcade it's PN and Revlimid DVT although these particular complications are extreme…[Read more]

Hi min your opinions are always of great comfort to me.
According to my blood tests my Kidney and Liver functions are ok.
The swollen eyes are down to extreme tiredness and fatigue.
Also my skin looks bleached,in fact I look like an albino LOL.
I am also off the alcohol,none at all since 12th Jan,see I even remember the date who's counting…[Read more]

Hi Nigel,they said to keep an eye on the spasms and if they become more regular to contact the Hospital asap.
It could be the start of PN in which case the Velcade dose would need to be reduced.
I'm currently on 2.6 mil.
The problem is that PN can become perminant if not addressed early,and that's one thing I don't want alongside all the other…[Read more]

Thank's Roz…Don't worry my love I won't give up.
It's not in my genes.

Keith.

Hi Nigel,I'm due to start my 4th of 8 cycles of Velcade+Dex on Friday.
I feel rough now most of the time but mainly the 4,days after the end of each cycle.
Also the effects seem to be accumulative the further I go into the treatment.
If this continues then by the time I get to the 8th I'll most likely be dead LOL.

Spot on Sandra,I start my 4th cycle on Friday and I'm not looking forward to it at all.
Last week for 3,consecutive days I was so tired it was actually keeping me awake if that makes any sense.
Drinking 3-4 Litres ain't easy as you say.
Try Becks Blue (none alcoholic)Larger which are better than plain water and taste the nearest to the real…[Read more]

Yes you're spot on David,MM cells do have the ability to switch off and lie dormant for a while before returning to wreak havoc.
The bottom line is there's still a vast number of questions to be answered regarding Myeloma and although we have travelled some distance there's still a very long way to go.
To find an antibody that can be injected in…[Read more]

Hi Andy,I would agree with what Min and David have already said with regards to the SCT.
I had mine in May 2008 and unlike David did make the magic zero PP rating and held it there for 2.5yrs before my inevitable relapse late last year.
I am currently on my 3rd cycle of Velcade with a second SCT planned for around the middle of the year.
The…[Read more]

Asked twice and still no go.
It seems this practice is a no go area around these parts so I'll just have to hope my veins hold out,even though the nurses are never shy to tell me they are just about shot to pieces.

One more on Mon and that's the third cycle completed and some well earned rest to allow my body to recover.

Keith.

Hi Gill,I am half way through the 3rd of a scheduled 8,cycles of Velcade+Dex and have to admit I'm starting to feel very tired and spaced out most of the time.
After the first cycle the side effects were few and far between but since then it's gradually started to have more of an effect.
Platelets have dropped but are still within the limits and…[Read more]

When you say you discussed with Doc I take it you mean Consultant and not your GP,coz I'd take anything they say with a large pinch of salt.
Of course I know I don't have you tell you that Phil now do I?
My legs feel a little weak also and sometimes ache from top to bottom but it does'nt last for too long.
Maybe it will get worse further into…[Read more]